Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
I really haven't got the interpretation of the labs that were done in Denver yet, but I thought I would post something about the experience and what I learned.
First, the FT3 test is useless. There is such a small amount of free T3 in the blood that there is hardly ever enough to test. The total T3 is better.
This is true. Either the FT3 is not really a measure of the free T3 but calculated by the total T3 by the lab, or it can't be accurately measured. Total T3 is measured in nanograms, ng = 0.000000001, whereas FT3 is measured in picograms, pg = 0.000000000001
Second, I was probably never affected by TED, as I was led to believe. As she examined my eyes, endo #3 said she saw no sign of Graves' ophalmopathy and it appeared on my chart simply as "strabismus."
The whole experience was like this:
1. I was ushered in to see the doctors before I had time to fill out their form, and I had tried to arrive even earlier than they suggested.
2. I say "doctors" because I first saw a normal endocrinologist, who got my history, making notes as I talked; then his boss, the endo I made the appointment to see.
3. They had their say about the Free T3 test, then proceeded to make it perfectly clear that they only diagnose and treat according to what the numbers say. I expected that.
4. I had filled out on the form that I don't smoke or drink, but the assistant endo asked me again about it. Then, asked an additional time with the boss endo there, "Do you have a little alcohol before bed to help you sleep." I got a little short with them and reiterated that I do NOT drink and do NOT smoke.
5. After informing me the same things my Endo #2 had said, Endo #3 asked if I would like to make another appointment with her. "Why should I, if you aren't going to tell me anything new? I might as well go back to Dr. XX."
6. I told her that the reason we came was because we expected that she was more of an expert on the thyroid since she didn't take diabetes patients. She corrected me, saying she doesn't take diabetes patients at that office, but goes to another office where she also sees diabetes patients.
7. As she seemed to be saying that my previous lab reports that Dr. XX had sent, didn't indicate any other problem with my thyroid besides Graves' Disease, I asked if she was reasonably certain that I had no other endocrine problem. She didn't think I had a problem with my adrenal glands, but said I could be given an FSH test to assure me that I had no problem with my pituitary. The Follicle Stimulating Hormone should be "sky high" since I am post-menopausal, if the pituitary is functioning normally.
8. She tested for TSH, FT4, Total T3, FSH, and said she would also test me for Hashimoto's. I presume that was the TPO and/or the Thyroglobulin antibody tests.
9. She felt my thyroid and said it was a multi-nodular goiter. She seemed to also check out my hair but made no comment. I just had my hair down long and as straight as it naturally fell, without any special treatments or products added beyond shampoo and conditioner from the hotel.
10. She checked my eyes, having me follow her finger from side to side, and possibly up and down, but I don't remember that distinctly. She also had me look up while she held my lower lid down so that she could see into the socket a bit. Apparently she didn't think it was TED because I had no protrusions of the eyeball, and no particular redness, etc. Both endos seemed to think it was quite humorous that I was diagnosed with Graves' by the eye doctor.
11. Altogether they could easily have spent 2 hours with me in consultation. I don't know how much that really matters, though, since it all depends on the numbers.
12. I got the results of the blood tests, but not how she interprets them.
Collected: 5/20/2013 11:38 AM
TSH ULTRASENSITIVE 0.50, Range: 0.50 - 5.00 mIU/L
THYROXINE/T4 FREE 1.35, 0.89 - 1.76 ng/dL
TOTAL T3 83, 60 - 181 ng/dL
FOLLICLE STIMULATING HORMONE 34, mIU/mL (see below:) [I am about 12 years post-menopausal.]
Category Range
Females
Normally menstruating
Follicular Phase......2-10
Mid-cycle Peak........3-33
Luteal Phase..........2-9
Pregnant..............less than 1
Postmenopausal........23-116
Males 13-70 years........1-18
THYROID PEROXIDASE ANTIBODY 317 U/mL
"89% of euthyroid individuals have values less than 60 U/mL. In patients with appropriate clinical findings, a value greater than 60 U/mL increases the likelihood that an autoimmune thyroid disease is presesnt."
THYROGLOBULIN ANTIBODY 4, less than 4, U/mL
"CAUTION: Interpretation of results must be done with the new reference range of less than 4.0 IU/mL. Previous results prior to 8/22/12 may have a different reference range and can not be compared."
First, the FT3 test is useless. There is such a small amount of free T3 in the blood that there is hardly ever enough to test. The total T3 is better.
This is true. Either the FT3 is not really a measure of the free T3 but calculated by the total T3 by the lab, or it can't be accurately measured. Total T3 is measured in nanograms, ng = 0.000000001, whereas FT3 is measured in picograms, pg = 0.000000000001
Second, I was probably never affected by TED, as I was led to believe. As she examined my eyes, endo #3 said she saw no sign of Graves' ophalmopathy and it appeared on my chart simply as "strabismus."
The whole experience was like this:
1. I was ushered in to see the doctors before I had time to fill out their form, and I had tried to arrive even earlier than they suggested.
2. I say "doctors" because I first saw a normal endocrinologist, who got my history, making notes as I talked; then his boss, the endo I made the appointment to see.
3. They had their say about the Free T3 test, then proceeded to make it perfectly clear that they only diagnose and treat according to what the numbers say. I expected that.
4. I had filled out on the form that I don't smoke or drink, but the assistant endo asked me again about it. Then, asked an additional time with the boss endo there, "Do you have a little alcohol before bed to help you sleep." I got a little short with them and reiterated that I do NOT drink and do NOT smoke.
5. After informing me the same things my Endo #2 had said, Endo #3 asked if I would like to make another appointment with her. "Why should I, if you aren't going to tell me anything new? I might as well go back to Dr. XX."
6. I told her that the reason we came was because we expected that she was more of an expert on the thyroid since she didn't take diabetes patients. She corrected me, saying she doesn't take diabetes patients at that office, but goes to another office where she also sees diabetes patients.
7. As she seemed to be saying that my previous lab reports that Dr. XX had sent, didn't indicate any other problem with my thyroid besides Graves' Disease, I asked if she was reasonably certain that I had no other endocrine problem. She didn't think I had a problem with my adrenal glands, but said I could be given an FSH test to assure me that I had no problem with my pituitary. The Follicle Stimulating Hormone should be "sky high" since I am post-menopausal, if the pituitary is functioning normally.
8. She tested for TSH, FT4, Total T3, FSH, and said she would also test me for Hashimoto's. I presume that was the TPO and/or the Thyroglobulin antibody tests.
9. She felt my thyroid and said it was a multi-nodular goiter. She seemed to also check out my hair but made no comment. I just had my hair down long and as straight as it naturally fell, without any special treatments or products added beyond shampoo and conditioner from the hotel.
10. She checked my eyes, having me follow her finger from side to side, and possibly up and down, but I don't remember that distinctly. She also had me look up while she held my lower lid down so that she could see into the socket a bit. Apparently she didn't think it was TED because I had no protrusions of the eyeball, and no particular redness, etc. Both endos seemed to think it was quite humorous that I was diagnosed with Graves' by the eye doctor.
11. Altogether they could easily have spent 2 hours with me in consultation. I don't know how much that really matters, though, since it all depends on the numbers.
12. I got the results of the blood tests, but not how she interprets them.
Collected: 5/20/2013 11:38 AM
TSH ULTRASENSITIVE 0.50, Range: 0.50 - 5.00 mIU/L
THYROXINE/T4 FREE 1.35, 0.89 - 1.76 ng/dL
TOTAL T3 83, 60 - 181 ng/dL
FOLLICLE STIMULATING HORMONE 34, mIU/mL (see below:) [I am about 12 years post-menopausal.]
Category Range
Females
Normally menstruating
Follicular Phase......2-10
Mid-cycle Peak........3-33
Luteal Phase..........2-9
Pregnant..............less than 1
Postmenopausal........23-116
Males 13-70 years........1-18
THYROID PEROXIDASE ANTIBODY 317 U/mL
"89% of euthyroid individuals have values less than 60 U/mL. In patients with appropriate clinical findings, a value greater than 60 U/mL increases the likelihood that an autoimmune thyroid disease is presesnt."
THYROGLOBULIN ANTIBODY 4, less than 4, U/mL
"CAUTION: Interpretation of results must be done with the new reference range of less than 4.0 IU/mL. Previous results prior to 8/22/12 may have a different reference range and can not be compared."
{{{hugs}}}
It's a good thing I believe in miracles, Bransnana, because I'm afraid you're right about the way the doctors, particularly endos, look at these labs.
And, mmztcass, I agree that treating the T3 problem with Cytomel would probably be much better than going the route with levo-thyroxine.
My best guess is that there are other things involved; but unless I can improve my general functionality with supplemental T3, it is more than I can handle to improve my diet and do any worthwhile exercise.
My eye problems were not straight-forward either. I never had bulging eyes, for example. And I didn't correct the endos in Denver and specify that it was a Neuro-Ophthalmologist who diagnosed me after a lot of testing under sedation, which showed how tight various eye muscles had become. There was a lot to talk about and I didn't think the details of my eye exams were so important.
I don't necessarily believe GD was NOT a factor in my eye problem, but, since the last chapter hasn't been written yet, what do I know? I just know that I had "strabismus" in my teen years and my thirties, and they got worse alongside my need for bifocals at age 60, which was also the same time as GD became evident.
She noted that my TSH was very low, bordering hyperthyroid; and that my total T3 was also low within the range, indicating that I wasn't so close to becoming hyperthyroid. Still, no good explanation as to why the TSH and thyroid hormones were not in agreement. Just blaming the low TT3 on low estrogen of menopause. I'll see what my OB/gyn says about that one. She wanted to hear what the new Endo had to say, anyway.
Endo #3 also said that the FSH test was high enough to show I didn't have a pituitary problem. And, you're right, she said no treatment was indicated for me at this time. She suggested that my PCP could run tests every 3-4 months and if my levels or symptoms change significantly she would be able to see me sooner, or she could just see me in May 2014 because I live so far away, and advise me by email between times if I want.
What I plan to do is to see my Endo #2 again--my appointment is in a week. I'll discuss things more thoroughly with him and go from there.
I asked my PCP to manage my thyroid, but it seems like he would not have been willing to do it if the local endo had not refused to continue with me as his patient.
At today's appointment with my PCP, we talked for probably nearly an hour. He seems to think a lot like I do. I gave him a copy of the email I got from #3, asking that my PCP run the labs for me.
Since I have both the GD antibodies that stimulate the thyroid, and Hashi's antibodies that destroy the thyroid, I said "It seems like I have to walk a tightrope, but no doctor can walk it for me. I just need the means to do it myself." He agreed.
He would have offered me Armour thyroid, but I thought I would like to see if my thyroid could be more balanced on Cytomel alone first since my T3 is much lower in the range than my FT4.
He agreed to prescribe a minimum dose of 5 mcg Cytomel that I could take basically as needed, up to 2x daily. They called it in, but when I picked it up it turned out to be only for 1X daily. I just split it in half, and I am going to be careful taking it, anyway. I also know that Cytomel is not recommended for patients over 60 and I am 64, so it may be that is why the pharmacy did not fill it for 2 pills daily.
I agree about starting off slow with the Cytomel any way. Let us know how that goes for you.
{{{hugs}}} :-)
I was a little excited when I went to bed last night, but I still slept at least as well as I normally do without Tylenol PM which I stopped taking, with the last dose being Friday. I fell asleep a little after 11:00 and woke at 4:30ish, turned over and fell asleep again. I woke for the day a little before 8:00.
I don't plan on taking more than a quarter-pill from here on out. I need a new pill-cutter, though. Are there particularly good brands? Or, good places to get them?